How long before side effects from Hydrea start?

Posted by arecchie @arecchie, Oct 21 2:52pm

I just finished week two of Hydrea. How long before the side effects, if any, start? I'm trying to gauge when or if I'm getting the side effects.

Also, does anyone know if you lose some hair (thinning out) or a lot of hair? I know it's different for everyone, but a timeline and any help you can share would be appreciated.

Thanks so much.

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@arecchie

Thank you. Best of luck to you in your PV journey.

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I have been diagnosed with Essential Thrombocytosis. Concerned about the side affects of Hydroxyurea and using nutraceuticals currently and my platelets are maintaining around 650.
What is PV? And why, and how often do you get phlebotomies, and results of platelets count after.

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I have been diagnosed with Essential Thrombocytosis. Im concerned about the side affects of Hydroxyurea, and currently using only nutraceuticals along with iron and daily aspirin. My platelets are ranging around 550-650. Any symptoms yet?

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@queenell

I have been diagnosed with Essential Thrombocytosis. Concerned about the side affects of Hydroxyurea and using nutraceuticals currently and my platelets are maintaining around 650.
What is PV? And why, and how often do you get phlebotomies, and results of platelets count after.

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After three Phlebotomies, I went from 720 down to 410 on platelets and 50 down to 37 on Hematocrit.

I no longer have to do phlebotomy.

Polycythemia Vera is a rare type of blood cancer that causes your bone marrow to make excess red blood cells. Because so many RBC are being made, many of them are odd shapes and sizes and the proliferation of them causes oxygen to the cells to be compromised.

Many people who have PV have bone marrow scarring. Fortunately, my bone biopsy revealed that my bone marrow has not been compromised.

I currently take 500 mg. per day of Hydrea, but because my iron levels are so very low, they may increase my dosage to taking an extra 500 on M/W/F each week to try and balance out the iron levels. Taking iron pills is not an option because it will signal for more of the blood cells I don't need to manufactured.

I have had no side effects after nearly 6 weeks.

Please take your Hydrea this way to avoid sores in the mouth and on your tongue. Someone told me that this trick works: Put a mouthful of water in your mouth before you slip the capsule from the prescription bottle cap into the back of your throat and swallow the water and pill immediately.

By putting the capsule in your mouth without water in it first, it touches the tongue and the inside of the mouth and can cause sores and ulcerations. My tongue began to sting and get so sore after the first 10 days. I went on this helpful support group thread and got this recommendation from a woman who told me how to take the pill. So grateful for the suggestion.

You will probably need to get a CBC w/Diff every two weeks so your doctor can assess how well the phlebotomies and the Hydrea are working. So far, no hair falling out, and no sores in the mouth.

Good luck and feel free to ask questions. Always check with your doctor if you want to do something you read about on this site.

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@arecchie

After three Phlebotomies, I went from 720 down to 410 on platelets and 50 down to 37 on Hematocrit.

I no longer have to do phlebotomy.

Polycythemia Vera is a rare type of blood cancer that causes your bone marrow to make excess red blood cells. Because so many RBC are being made, many of them are odd shapes and sizes and the proliferation of them causes oxygen to the cells to be compromised.

Many people who have PV have bone marrow scarring. Fortunately, my bone biopsy revealed that my bone marrow has not been compromised.

I currently take 500 mg. per day of Hydrea, but because my iron levels are so very low, they may increase my dosage to taking an extra 500 on M/W/F each week to try and balance out the iron levels. Taking iron pills is not an option because it will signal for more of the blood cells I don't need to manufactured.

I have had no side effects after nearly 6 weeks.

Please take your Hydrea this way to avoid sores in the mouth and on your tongue. Someone told me that this trick works: Put a mouthful of water in your mouth before you slip the capsule from the prescription bottle cap into the back of your throat and swallow the water and pill immediately.

By putting the capsule in your mouth without water in it first, it touches the tongue and the inside of the mouth and can cause sores and ulcerations. My tongue began to sting and get so sore after the first 10 days. I went on this helpful support group thread and got this recommendation from a woman who told me how to take the pill. So grateful for the suggestion.

You will probably need to get a CBC w/Diff every two weeks so your doctor can assess how well the phlebotomies and the Hydrea are working. So far, no hair falling out, and no sores in the mouth.

Good luck and feel free to ask questions. Always check with your doctor if you want to do something you read about on this site.

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Thank you so much. I figured out the acronym for PV. Feeling a tad overwhelmed due to the diag. of Essential Thrombocytosis (ET), which is different than PV, yet similarly treated. The potential side affects associated with Hydroxyurea is my concern, therefore I'm trying natural remedies for 6 months, and getting labs q 2 mo.. My platelets have been stable around 600, and RBC and Hgb are normal. I'll revisit Hydroxyurea after my next exam in Dec. Thanks again🦋

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@ronegeorge

I have been taking daily 600mgs of HU for 6 yrs (Droxia formulation). When I started I didn't like how I felt when I took 1000mgs every other day, alternating with 500mgs. I suggested using Droxia so I could have the same dose each day, and my hematologist agreed and said to take 600mgs/day. I'm 77, PMF, JAK2+, with elevated platelets, which have lowered to normal in the past year. Fortunately, I haven't had much trouble tolerating the Droxia.

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Is your diagnosis ET?

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@queenell

Is your diagnosis ET?

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No. As previously mentioned, it is PV

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@queenell

Thank you so much. I figured out the acronym for PV. Feeling a tad overwhelmed due to the diag. of Essential Thrombocytosis (ET), which is different than PV, yet similarly treated. The potential side affects associated with Hydroxyurea is my concern, therefore I'm trying natural remedies for 6 months, and getting labs q 2 mo.. My platelets have been stable around 600, and RBC and Hgb are normal. I'll revisit Hydroxyurea after my next exam in Dec. Thanks again🦋

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My doctor told me that 600 for platelets is far too high. The range at the high end of the acceptable range is around 450 - tops.

Are you using Reversatrol?

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@queenell

Is your diagnosis ET?

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I have been diagnosed with primary myelofibrosis for 6 yrs, after having elevated platelets, and after having a bone marrow biopsy, which detected excess megakaryocytes. I'm now 77. Ron

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@queenell

How did you feel initially when taking Hydroxyurea, symptoms? Before your dosage was reduced?

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Like crap. I had severe sensitivity to sunlight even through my clothes and inflamed sore gums. Some joint pain as well but after being on 3X a week, from 7X it’s just an occasional sore mouth and some random tooth pain. I guess it beats blood clots, heart attack or stroke? So we go forward. Good luck!

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@queenell

I have been diagnosed with Essential Thrombocytosis. Im concerned about the side affects of Hydroxyurea, and currently using only nutraceuticals along with iron and daily aspirin. My platelets are ranging around 550-650. Any symptoms yet?

Jump to this post

What dosage have you been prescibed? ET patients usually only need very low dosages of hydrea. Be sure to drink plenty of water (I drink at least a litre daily) to help flush the med and keep any possible side effects to a minimum. If you get mouth sores, up your intake if water a bit and rinse your mouth with salt water or a good mouthwash. Hydrea will bring out any former sun damage you already have and will likely cause sensitivity to the sun, so be sure to wear protective clothing and a good hat if you need to be outside during the day when the sun is at it's peak. I've had JAK2 positive ET and have taken Hydrea for several years now and my platelets are in the normal range. I rarely have any side effects from the meds.

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